Reggie - who first found fame by winning TV reality show Big Brother in 2003 - has now released two videos of her son Lucas and his continued fight against Cystic Fibrosis, one in which he appears to be in excruciating pain in hospital, and another where he is demonstrating a blood-sugar reader for his CF-caused diabetes.

"We go to hospital for what I call a 'tune up' every two weeks," Reggie explained.

"But he's also petrified of needles and hates anything to do with hospital."

While there are multiple treatment options available to Cystic Fibrosis sufferers in Australia, they are largely aimed at treating the symptoms of the disease, not the cause.

Orkambi targets the cause of Cystic Fibrosis, greatly improving the health and well-being of sufferers.

It is aimed at treating CF sufferers who carry a certain genetic strain of the disease, of whom there are approximately 1,000 sufferers in Australia.

Vertex described the medication as "the first medicine to treat the underlying cause of cystic fibrosis in people who have two copies of the F508del mutation. It has taken more than 15 years, the screening of nearly 400,000 molecules, thousands of dedicated people and billions of dollars in research and development."

However, Vertex and the Australian Government have been unable to agree on terms to allow the drug to be added to the Pharmaceutical Benefits Scheme (PBS).

Which means to access the drug, families would have to come up with $260,000 per year.

Cystic Fibrosis is already an expensive disease to treat, so this incredible cost is prohibitive to even the most desperate of CF families.

Reggie isn't the only CF mum praying the drug is added to the PBS sooner rather than later.

Sonia Marshall, who lives on the Sunshine Coast in Queensland, has two daughters, the oldest of whom is Evie, 12, who also suffers from Cystic Fibrosis.

"She's okay at the moment," Sonia told 9Honey. "She had a bad year last year - she almost spent Christmas in hospital but we dodged a bullet - and we're on the up at the moment.

Sonia said since her daughter turned 12, it's been a rough road.

"Last year was a really hard year because she became that little bit older and aware that she was really different from the other kids," Sonia explained. "The other kids don't have to do all of their treatments on school camps and they don't miss out on sleepovers at friend's houses because they don't have to go with their suitcase full of tubes and medication.

"It's a tough gig. Don't get me wrong, we don't feel sorry for ourselves, you just have to do it."

Sonia and her daughter Evie follow a similar daily regimen as Reggie and her son Lucas.

Both children are connected to machines that feed them during the night, tethering them to their beds until they are disconnected each morning. They both take an extraordinary number of pills each day.

They repeat physiotherapy exercises several times a day.

And both children miss an extraordinary amount of school due to their health, which affects not just their friendships and academic performance, but their mental health.

Both children's lives could be transformed by Orkambi and both families are praying it will be made available soon.

Nettie Burke, CEO of Cystic Fibrosis Australia, say the organisation has been campaigning hard for the drug to be made available to Australian families.

"Orkambi treats the disease of Cystic Fibrosis, not just the symptoms," she explained to 9Honey.

"If you have an illness and every day of the week your lung function is declining from CF and there's a drug out there that can stop that, and you can't access it, that's devastating."

Some families in Australia with seriously ill children have managed to access the drug by applying for 'compassionate access' through the company, however, they are so sick they are on the brink of needing a lung transplant.

It really is their last hope.

Neither Evie or Lucas are at that stage yet. But both are desperate for some normalcy in their lives.

Reggie told 9Honeyit's been hard to watch her son suffer since he developed the staph infection.

"I have my moments where I melt down and I just pick myself back up again. But I look at what Lucas goes through and I have to be his rock."

Since his suffering has increased of late, Reggie said her son has been wishing he was no longer here.

"Just lately he's been saying he doesn't want to be here anymore and he hates CF. I cried and cried."

Reggie is hoping Orkambi is made available in time to help her son.

"All I want is for someone from the government to please just spend a day with us doing physio, nebulisers and watch how many pills Lucas takes each day to stay alive!

"Go to the clinic, and go through the CF ward and see what we go through! Even for a week!

"See the pain. See the heartache. See how much better things would be having this drug."

A spokesperson for the Australian Government Department of Health responded to our question about Orkambi being added to the PBS with the following statement:

"At its July 2017 meeting, the Pharmaceutical Benefits Advisory Committee (PBAC) considered a submission for the listing of lumacaftor with ivacaftor (Orkambi) on the Pharmaceutical Benefits Scheme (PBS). The PBAC did not recommend this drug for listing at that time.

"Details of submissions or pricing negotiations with sponsors of PBS medicines are commercial-in-confidence. If PBAC gives a positive recommendation, then the Government will move to list it on the PBS."